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Nolan

Nolan was born with six holes in his heart and needed surgery at 5 months old.

11/18/2016

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It was Halloween night in 2012, and Megan Peck was growing resentful. A bit angry even.

As she looked through social media posts, she saw worries about children’s costume choices. Others were fretting about whether they had enough candy to pass out to all the Trick-or-Treaters.

“The whole rest of the world had to worry about easy things,” Peck said. “And I had to hand my son over for open heart surgery the next day.”

The next day, Nov. 1, 2012, well, that’s a date the Peck family won’t ever forget. But for Noblesville residents Megan and Mitch Peck, it started as their worst day – a day of unknowns, a day of uncertainty.

A day to worry about the most important things.

The Peck’s son, Nolan, was born in June 2012. Nolan has Down syndrome and was born with a co-occurring condition called atrioventricular canal defect that is often associated with the genetic disorder.

Translation for Nolan: He was born with six holes in his heart.

Journey begins

The pregnancy was perfect, Megan said. No complications, no concerns. But a few hours after Nolan was born in Noblesville, doctors came in to tell the Pecks that their son needed to be Lifelined to Riley at IU Health due to concerns about his Down syndrome and his heart.

“Pretty much the second time I saw my infant, he was in that huge incubator getting ready to go into the ambulance,” Megan said.

Nolan spent nearly 3 weeks in the NICU at Riley, and a surgery date was set. When Megan was able to see Nolan in the NICU – only the third time now that she had seen him – she didn’t even recognize which baby was hers.

But Megan remembers that visit for another reason. A NICU nurse, Emma, welcomed the Pecks, congratulated them on their new baby and offered support.

Here’s your baby, Emma told the Pecks. You need to sit down, hug him, hold him and love on him, she said.

“(Emma) really helped me be a mom before I was a mom to a child with special needs,” Megan said.

As Nolan’s NICU journey progressed, the nurses began requesting Nolan and the Pecks got to know the care team well. Nurses helped Megan and Mitch learn how to specially care for Nolan – how to change an NG tube or how to connect him to monitors.

“We had to go home every night and trust our newborn with these people,” Megan said. “They very much gave us the feeling of comfort and support that they would take care of our kid so we could take care of ourselves.”

And Nolan was spending a lot of time at Riley. His heart was just struggling. Several times, his lungs would fill up with fluid and he would stop breathing. There were ambulance trips and emergency room visits.

Nolan needed that surgery.

‘A beautiful day’

The nurse came to get Nolan for his surgery at Riley on the morning of Nov. 1. Megan simply couldn’t hand him over. She had to have Mitch do it for her. It was too much for her at that moment.

The 4-hour surgery felt longer than that. Much longer. The Pecks surrounded themselves with friends and family that day, but it still seemed like 40 years of waiting. As minutes ticked past, Megan kept wondering what was happening to her son at each moment.

When the surgery was over, Megan and Mitch went back to the pre-op area. They weren’t sure what they were going to hear.

Then the surgeon, Dr. John Brown, rounded the corner. He had a huge smile on his face.

“It went perfect,” Dr. Brown told them.

Dr. Brown shared more information – about how many holes there really were in Nolan’s heart and how they were bigger than they thought – but Megan had trouble listening.

“All I could focus on was the huge smile on his face,” she said. “I felt on top of the world, untouchable. It was by far the best day of our lives. It started off as the worst, and ended as the best … It was a beautiful day.”

Nolan’s recovery was fast – by his last day in the hospital, the 5-month-old was ripping off his cords and kicking off his blankets. It was as if he knew he was ready to be home.

And now, at 4½ years old, Nolan is a happy, energetic kid, his mom said.

Time to celebrate

Nov. 1 is a holiday in the Peck home. It’s a day to celebrate Nolan’s “heartiversary,” and the Pecks choose to celebrate by giving back.

Every year on that date, the extended Peck family gathers to serve dinner at the Ronald McDonald House at Riley.

“I like giving back to the Ronald McDonald House because of the healing process that happens there,” Megan said. “We’re not just handing out a meal. We sit and listen. People just want to tell us stories about where they are and what they are feeling, and we can offer them hope.”

Megan has a master’s degree in clinical education and social work and has made a career out of supporting and counseling families who are in similar positions to her own. After Nolan was born, she took steps to create a Gigi’s Playhouse location in Indianapolis. The Down syndrome achievement center offers programs and support for families with no cost to them.

It is a place where “you can walk in and people say congratulations to you,” Megan said.

For Megan and the Peck family, Nolan’s life has taught them many lessons. They kind of let Nolan set that pace.

“That’s what he teaches us – to just take every day for what it’s worth and focus on today,” Megan said. “It’s hard not to get overwhelmed about the future, but he shows us every day that he can do more than we expect. So we’ve kind of learned to not put any expectations, not put any limits and just let him shine and be who he is because he certainly takes charge and runs with it.”